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Pearls of Tumors Draped Inside My Neck

I miss you sometimes. When I finger my scar and realize you are not around anymore, I get a bit sad. After all that has happened these many years, I can remember how my personal hell started.

Well, let me tell you how it all went for me. It started in 1997. Two years out of high school. My mom discovered a strange lump in my neck. I was thinking it was nothing until I looked myself. I didn’t want to go to the doctor but decided to go ahead and go because I used to have a neighbor who had a huge (very huge) lump in his neck and he never had it checked out until too late.

Well, the doctor took a look and tested me by making me drink water and he felt my neck. He told my parents it looks like a tumor and I would need tests. It made me angry and I stormed out of the office but it was killing me while I was outside (also killing me inside) and I started getting terribly upset. When I got home, I went into my room and cried thinking it was cancer. I eventually calmed down. In the next few weeks, I had to go through several tests, sonograms, taking the iodine pill so they can see the size of the thing. Then I went through the terrible biopsy when they shoved three needles into my neck. I didn’t know what to expect and I was there in the room alone with the doctor. I was in hell.

The results did show that the tumor was benign but I had to go through surgery. They told me if I left it in there, it could turn malignant.

That was my very first surgery ever. I thought it would be my last though. The doctor said there was no chance of it coming back. I don’t know if he just said it to make me feel better or he actually thought it would never come back.

A few years later, it came back but there were several more tumors surrounding my thyroid. The nurse who did my sonogram just bluntly said “Oh, your thyroid is so messed up. It has all those lumps.” Since that doctor moved away when I was discovered with more, I had to get to know a new surgeon. He confirmed it was true when he felt my neck and said there were indeed more tumors. More sonograms followed but now I was starting to take levothyroxine. It was working at first until I started feeling the tumors grow.

The new doctor didn’t want to do a surgery so he recommended me to an endocrinologist. Since then, I have been trying to control my tumors with a certain dosage of levothyroxine. All through this pain, I have met someone online when I was discovered with more tumors. (around 2002) He was my support when they told me I had more tumors and I had to raise or lower my medication. Everything was looking fine until 2008.

My boyfriend is from Britain and he came to visit me in Texas for vacation. But during that time, I felt something very wrong. I was tired when I didn’t do anything, had false energy some days, heart beat went faster, irritable on certain days, ate and ate. After my honey left, I went for my usual sonogram and blood tests. When I saw the doctor he told me two more tumors grew and my thyroid no longer worked.

Everything froze in place when he said I needed surgery. It didn’t hit me at first until I started to cry and wouldn’t stop. When I got home, I went into my room and cried even though he reassured me my tumors were benign and surgery will make me feel better. My sweetie just left for home and my world fell apart when the doctor told me the news. I called my sweetie when I was sure he was home and told him. He wanted to come back but I wouldn’t let him. He just got back to work and I didn’t want him in trouble. I told him I loved him and when the time comes, just be home on that day.

The next few months, I had to prepare myself. I had to meet the surgeon and get time off work. On October 16 2008, just before I went into the hospital, I called him and told him I was scared but that I loved him very much. He told me he loved me and will be waiting for my mom to call. I went to the hospital with my parents, was prepped for surgery, and needed something to calm me down because my blood pressure was going up and my heart thudded in my chest. Before they wheeled me in, I sent a text to my sweetie telling him I loved him. He told me he loved me and the only thing I remember was saying bye to my parents and looking at the doctors in the masks and gowns.

When I woke up, I had several bandages on my neck, didn’t want to wake up, wanted to sleep, but the nurses were trying to make me take a medication. I felt horribly sick and got sick literally and fell out of my chair coughing and feeling worse. I threw the medicine cup at those nurses and my mom had to help me back in my chair. The doctor came in and checked to see if I was alright. He gave me good news. He removed my thyroid and all of the tumors are gone. I was to go home that same day to recover more.

When my parents took me home and I went to my bed, the only thing I remember was my mom calling my boyfriend telling him surgery went well and I am now asleep. After a few weeks, the surgeon checked me and said that I should be much better now and the stitches will soon dissolve.

What I hate though is when morons start staring at your neck when it looks like Jack the Ripper slit your throat. I covered my stitches with a scarf and eventually they dissolved.

When I next saw my endocrinologist, he was very pleased that my results are more positive and the symptoms I used to have disappeared. This October, it will be two years since the surgery and I feel lucky. After all that has happened, I still feel haunted but I have my darling and my mom. I use my story to help people and to reassure them that even if things look bleak, they are not alone and can always count on others who have been through similar experiences.

I went through similar, not as many nodules or tumours as you, but one big mother F that caused so many problems for the surgeon. they all thought it was cancer even biopsies weren’t giving them any clue because they all came back non conclusive. I had to make the decision because I wasn’t going to be pushed into to having my thyroid out. I did and I regret every minute of it, not the 4″ scar that covers my neck the fact that the replacement just doesn’t cut it for me.

I hope that you have a better time of it then me, one can’t take chances with lumps tumours and nodules but i wish they would follow up with the correct treatment post op.

Thank you for sharing your letter it must have been so hard and scary for you.

I hope you continue on the path you are on, two years without going under the knife, is an accomplishment in itself! I so can relate to your story….No matter how dire my situation(s) have been, I have never had to look far to find someone in a worse situation than mine! Keep up the positive spirit,as you will make a difference in the lives of others.

thank you so much for sharing your story …i am going into surgery to remove my thyroid next month and i needed somebody to honestly tell me what does it really feel like ….i am worried about living on replacement meds and having hypo symptoms so i wonder if you could tell me what does it feel like and how are you coping with it?….

hope u never have to undergo another surgery ever again , Good luck to you and all your loved ones …

Thank you all for your kind thoughts. I’m sorry I haven’t been on to post quickly so I am making time. I will never be free from this nightmare since I have to take levothyroxine always. I look at my scar and sometimes I hate it but sometimes I love it.

The first time I had the tumor, I was facing it alone. The second time around, my boyfriend came into my life and we faced it together. Finding this site and learning about others who have this same problem, I find that I am not the only one. I want to do what I can to help others and get them through the fear and pain they must feel when they are first diagnosed.

Dee, I wish you the best of luck before having the surgery. It is scary when they prepare you. They had to calm me down first because my blood pressure was rising. I was really scared. I knew what to expect because this was my second surgery but it was still the worst day of my life. Once they wheel you into the operating room though, the only memory you’ll have is the doctors in their masks.

When you wake up, you’ll feel uncomfortable because your neck will be bandaged up completely and it’ll hurt a bit if they want you to talk. You might feel sick too because of the anesthesia. I wasn’t sick the first time but I was on the second time. If that happens, have whoever is with you, give you a little bit of ice to suck on. They’ll confine you to bed for two weeks. You might not feel like eating the next day and you certainly won’t feel like eating anything when you wake from surgery. You’ll feel a bit better after the first week passes.

I take levothyroxine since my thyroid is completely gone. When I had those tumors in my neck, I felt insane. Tired, false energy, mood swings, and eating more. Once everything was gone, I felt better. My levels were starting to get controlled and my symptoms have stopped. I can’t forget my pill though because if I forget or if it’s really late when I decide to take it, I feel anxious like I want to do a lot of things. The medication makes me feel calm.

How am I coping? I find good friends who have suffered thyroid problems as well. We relate to each others stories. I help fellow sufferers who feel hysterical after learning they have a lump and assume the worst.
It can be tough sometimes but I am doing much better.